Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
Hello my friends,
Today is a good day for me, and I actually feel somewhat normal for a change. One new thing that I've noticed lately is that from time to time I drool. This is embarrassing to me when in public. Most times I don't realize It myself, and my wife is reluctant to mention it for fear of hurting my feelings. It started mostly at night when I would sleep, but now it happens during the day. Some days not at all.
Being in what my nero calls early onset PD I'm confused. Isn't this usually in the more advanced stages?
I just fear that maybe my PD is advancing quicker than he knows or is telling me. However my other symptoms have stayed about the same and I haven't noticed any change since he started me on Sinemet about 7months ago.
As always, thanks for your input and your friendships.
Vic
Today is a good day for me, and I actually feel somewhat normal for a change. One new thing that I've noticed lately is that from time to time I drool. This is embarrassing to me when in public. Most times I don't realize It myself, and my wife is reluctant to mention it for fear of hurting my feelings. It started mostly at night when I would sleep, but now it happens during the day. Some days not at all.
Being in what my nero calls early onset PD I'm confused. Isn't this usually in the more advanced stages?
I just fear that maybe my PD is advancing quicker than he knows or is telling me. However my other symptoms have stayed about the same and I haven't noticed any change since he started me on Sinemet about 7months ago.
As always, thanks for your input and your friendships.
Vic
Maybe you should run this question by your neuro or the PA in the office for peace of mind.
I'm sure someone else with experience will comment.
Early in my dealings with PD I had a problem with drooling. I was still working at the time and it was particularly embarrassing. It usually happened around food (donuts in the am or lunch) or when I was hungry. I spent a lot of time hiding in my cubicle. Gradually the problem subsided as I got my meds right, although I still do a little at night.
I have been on a Sinemet cocktail for over 3 years now and I haven't had the daytime problem for quite awhile. Maybe this will be a short-term problem for you, too.
For what its worth....
Despite commonalities shared by people with PD, it's nevertheless a different disease for many people because its symptoms can be very different throughout the disease (e.g., many have tremors, others don't) and at different stages of the disease. The key indicator of PD is one's responsiveness (or lack thereof ) to Sinemet / carbidopa-levodopa.
Having a dooling issue does not in itself mean that your PD is advancing. My mother has advanced PD, yet she's never had an issue with drooling; on the contrary, she has -- and has had for several years -- a problem with dry-mouth which makes understanding her more difficult, especially now that she speaks more quietly and in sentence fragments in the past couple of years.
Having been totally involved (actually, "immersed" is a better descriptor) in my mother's health issues since she first became symptomatic in 2004, including doing a lot of research over the past 10 years, the the indicator of advancing PD is the degree to which Sinemet remains -- and loses -- its effectiveness and, in many cases (like my mothers), the onset of dyskenesia from prolonged use of SInemet as well. For some, too, there are signs of cognitive impairment that also add to the awareness of the advancement of PD.
For what it's worth, I'd focus less on worrying about possibly so-called milestones which may or may not be indicative of the advancement of PD than on maintaining the best quality of life possible at all times. I've been guilty of watching for "PD milestones" with respect to my mother, especially in the past two years as she appeared to succumb to PD and we also lost my father, who had been her primary caregiver. Something changed within her, since which time she's made a wonderful come-back... all relative, of course, given that she has advanced PD, yet still inspiring.
In short, rather than focusing on the future and the disease level, we focus on living with PD and making each day as good as possible. Just like aging, it's not the number of years, it's the quality of life....
Hope this helps a bit. :-)
Iris
Just to be clear, I am not at all unhappy with my treatment and in fact very pleased. After getting the dosage of Sinemet right, and overcoming the side effects my tremors are now very minor and most times not at all. The drooling however is new to me but again, not all the time. I have an apt next week with my Nero and hoping he doesn't change my meds. Maybe he can give me something to compensate?
Either way I'll deal with it. I am a very positive person because I still have so much to be thankful for. My voice is strong, my tremors are minimal, I can walk most days without a cane. Most people who don't know me wouldn't know I have PD at all.
I do understand that we all react differently to our med's and was just curious if anyone else had this in their early stages of PD.
I'll let you know how I make out next week after seeing my doc.
Thanks all, and hope you have a great day !
Vic
Also he uses a mouthwash to rinse this mouth and it also helps.
I hope this helps you a little and I know it can be embarrassing in public, if you have that problem.
LYNNIE
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Everyone with PD has different problems. Most suffer with constipation but I have yet to have that problem. Why I don't know.
And yes, even though the Sinemet is working very well for me, I still have many days that walking is an issue and I need my cane. For 2 days now the drooling hasn't happened, and I'm sure it's because I have a Nero appointment this Fri lol Just like going to the dentist.
I am blessed by a N who has a sincere belief that God is the healer, and he the instrument, so it makes my visits easier. Wouldn't be everyone's cup of tea, but it suits both me and my husband (caregiver) well! I always have Jim go in with me, first so I really HEAR what he's actually saying, and so Jim can bring his concerns, which may be different than mine.
I guess I have become so used to it, that I don't notice it. So yes I agree Annie, It is important to have your partner/caregiver go with you. Right now I'm feeling really good, and hoping to get a good report from my doc on Fri. I have no intention of letting PD destroy my life and fully intend to keep doing the things I enjoy doing. Maybe just in a slightly different way. We have to learn to adapt and overcome by hook or by crook.
re: early onset. I was 32 years old when a symptom became visible to me and the rest of the world. A crazy twitch and splaying of the little finger on my left hand. It took another 25 years to get a formal dx of PD. By then, I could no longer work! PD has long been associated with the elder population but newly dx'd patients are getting younger and younger with more and better diagnosing expertise being brought to the forefront.
re: Drooling .... a symptom of PD, anything to make you feel worse about yourself! You can't ever really get used to it. What I do is make sure I have a handkerchief or two in my pocket when I go out, or make sure I have ready access to tissues. I wish I had something better to tell you buddy, other than PD us cruel and unusual punishment for all of us!
.ve
re:Drooling